Self Determination, Choice, and Disability Rights

Before a person with a disability can secure a place at a decision-making table to bring about change -- access, availability, and rights -- they need to be self determined in their own lives. Even with that they need choices from which to pick and a team helping them secure those choices. The process of becoming self determined and making choices in one own life, prepares a person with a disability contribute to decision-making in large contexts.

At the Center on Disability Studies, College of Education, University of Hawaii at Manoa, my colleagues, Eric Folk, Bob Stodden, and Sean Nagamatsu, with funding from federal and state sources, are running three projects to help individuals with disabilities achieve success in postsecondary education. A key component of their work is to expose young people to the concept of self determination and apply its principles in their own lives. They define self determination as when an individual has the awareness, skills, and power to make the right decisions for themselves and their futures. They break down self determination into four things 1) knowing what you want, 2) regulating yourself to work for it, 3) believing and knowing you will succeed, and 4) finding partners and advocating for what you want.

Folk et al. train young people in how to be more self-aware; regulate their habits, actions, and thinking, that is be in control; introduce self-efficacy, that is aim high; practice self-advocacy; set goals ("a goal is a dream WITH A PLAN you will actually do"); engage in problem solving (identify a challenge, consider ways to address it, decide which way to address it, and then take action); be decision makers (identify options, consider each based on facts, and select the best option based on your goal, life vision, and situation).

Practicing these basic skills in one's own life prepares everyone to be meaningful contributors at decision making tables where access, availability, timing, supports, funding, staffing, and other key decisions are being made about community improvements in education, jobs, health care, housing, transportation, retail sectors, physical infrastructure, justice, elections, and use of leisure time.

Rights are words on paper. The UN disability rights treaty, the Convention on the Rights of Persons with Disabilities, gives us a vibrant blueprint of what should be. But, it falls to us to bring these words to life. So many people with disabilities, especially in developing countries, in rural areas, and from disadvantaged groups, lack the opportunity to become the decision maker in their own lives, much less help shape what their communities or nations offer to be in sync with the UN treaty. We must find the ways and means to reach these people. First, we need to listen. Second, we need to help them with THEIR preferences, priorities, or goals. Third, we need to offer a process for reaching THEIR goal(s), a process that is translated into a local frame of reference. For example, we cannot demonstrate how to plan if a person or group have never heard of or done planning. Fourth, we need to explore with these people how to capture and preserve the evolution of their efforts -- dairies, story telling, records, and reports -- written and audiovisual -- that become a natural, acceptable extension of in-country traditions.

If we do all this with respect and patience, the right kind of attitudes, behaviors, and policies will blossom; communities will be more inclusive; and individuals with disabilities will help stitch the social fabric of their neighborhoods, towns, regions, nations and our collective history.

Thank you,
Common Grounder

Measuring the Status of Disability Rights

 There is modest support around the world for training individuals with disabilities, especially through disabled persons organizations (DPO‘s), to learn about and push for implementation of the UN  Convention on Persons with Disabilities.  Emphasis is given to sharing information, perhaps some role-playing exercises, but not much time or money is spent on tracking  immediate, intermediate, and long-term impact of training.  The answer is obvious. Impact evaluation is labor-intensive, time-consuming and expensive.  So when we ask for money for yet another disability rights study/initiative, funders ask where is your evidence-based information?  We may be able to provide numbers in some cases, but often all we have to make our case is case studies and anecdotes.  This needs to change. We all have to get serious about compelling evidence and develop practical ways for collecting it.

One option might be to adapt the SMART Goals approach and use it to collect information on the status of disability rights. The “S” stands for specific, the “M” for measurable, the “A” for achievable, the “R” for relevant, and the “T” for timing. This rubric is all over the web. It is explained, used, and promoted in educational contexts usually.

 In a disability rights context the “Specific” would be what do we want to measure; for example access, availability, inclusion, participation, independence, choice. Yet, we need to place these “ outcomes” in a situation — access to what, availability to what, inclusion in what, participation in what, independence connected to what, choice over what. “Measurable” to us would mean we could count something and compare it to a baseline or compare what we find across locations, populations, or environments. We could measure satisfaction, change in circumstances, degree of influence, or scope of change.

“Achievable” means first and foremost that we have a strategy(ies)  to implement a goal AND measuring something AND the resources to do it. This component of a SMART goal is so important because if we do these things right we have the justification for sustainability and the foundation for replication by others.

“Relevant” is the key link to rights. Is what we are expressing, measuring, and achieving valued by the individual with a disability, groups of such individuals, their families, and society in general? We need to do pre-assessments on what we think is important by getting input from these several constituencies.  This input will allow barriers and unexpected allies or partners to surface.

Of course, how much time we have to design, implement, and evaluate a SMART goal keeps us grounded and practical, and also makes us accountable. If we do what we said we  are going to do by the time we said we were going to do and have compelling results to show for it, guess what — we have credibility, an army of supporters, a guide for others, and evidenced-based reasons for systems change.

As you think through the application of the SMART goal paradigm in a disability rights context, remember the five components are integral to each other.  As you shape your approach to one component that may influence how you shape others.

We need to make measurement a central, integrated element of anything we do to advance disability  rights.  If we do, others, including governments, will take us more seriously, and accept or develop policies that make sense and are enforceable.

Thank you.

Common Grounder

IT'S TIME FOR INCLUSIVE INFORMED DECISION-MAKING

 Individual Level. 

The perspectives of an individual with disability, delivered by that person at the right time, means that decision-making that affects that individual, will be well-informed and result in positive outcomes, especially related to quality of life.

There may be situations in which an individual cannot fully represent the individual’s perspective at a decision-making event that will affect the individual, because of age, communication facilitation, distance, lack of accessible transportation, appropriate supports, risks, and other factors. In these situations, policies are needed that outline what proxies, services, and supports, including technology, will be provided so that the individual’s perspective carries central weight in arriving at decisions that will affect the individual.

Community Level.

Community decisions affect the nature of what community members can expect and receive. People with disabilities need to be present when these community decisions are being made. Community decisions are related to a diverse variety of contexts – availability of housing, food and water, education, health care, jobs, transportation, justice, voting, leisure activities, and other elements of community living. Often community decision-making events address if something is going to be promoted, increased, improved, expanded or terminated, as well as the cost or savings involved.

The “how to” part of a decision to be made can benefit from the perspectives of individuals with disabilities; such as – where something is to be placed, physical access to it, and ability to use it/participate in its use with others; and when something happens, how frequently it happens, and for how long it happens. Decisions like these require policies, so that community expectations and what happens align. If individuals with disabilities play a role in making these decisions and shaping policies related to them, the outcomes for the entire community are enhanced.

Regional Level.

Because of geography, race, language, religion, culture or other factors, people may come together to live and/or make decisions that affect large numbers of people beyond a particular community. Some decisions are value-driven – who should be included vs. excluded, who should “represent” a particular group, what are the assumptions underlying a particular value, and who or what has the power to change things? At this level, if and how individuals with disabilities are perceived – as an equal partner or something less – will influence whether their perspectives are part of the process of reaching decisions. If they are viewed as equal partners then decisions and their outcomes are likely to benefit great numbers of people.

National Level

At the national level participation at decision-making tables is pivotal. These decisions drive new policies and affect established ones. These decisions are shaped by what bubbles up and trigger what trickles down. Perspectives of individuals with disabilities, especially those coming from their problem-solving experiences, help to build policies that can be easily interpreted and practically implemented. Including these perspectives may mean that what is decided will pay off in intended and unanticipated ways – have positive economic implications, create new partnerships, and having a positive view of the future.

International Level

When the perspectives of individuals with disabilities are included and valued at decision-making tables then more meaningful discussions about what works, the importance of context, and judging of credibility within the process of decision-making surface. Resulting decisions are more grounded and people have more confidence in their feasibility and likely impact.

Intersectionality of Levels of Participation by Individuals with Disabilities in Decision-making

The inclusion of people with disabilities in decision-making is not a “snap-your-fingers” kind of thing. It takes thoughtful conversations, training, trial and error, and a full commitment to bringing it about. If an individual can leave home and travel to a meeting in the community, many things must be in place and work the right way first – personal care, transportation, and appropriate supports. When this person is seen and heard in a community decision-making meeting, things change. Others want to know how it happened. Others hope and take actions so they can do the same thing. As more and more people with disabilities are seen and heard at diverse decision-making tables in the community, this fact and their participation at regional decision-making tables becomes acceptable and natural. Behind them is what has been positively impacted at the community level. They arrive at regional decision-making tables with evidenced-based information. At the national level they have the same opportunity – to drive policies that are evidenced-based. For example, this is what we need in place to ensure educational opportunities, foster jobs, access to voting, or appropriate treatment by the judicial system. The collective experience of individuals with disabilities from across the globe brought about the U.N. Convention on the Rights of Persons with Disabilities and the inclusion of disability perspectives in the U.N.’s Sustainable Economic Development Goals.

Questions Related to Informed Inclusive Decision-Making

In order to bring about Inclusive, Informed Decision-Making at all levels we must ask ourselves six basic questions –

1.     What types of services, supports, and accommodations must be available to an individual in order to leave home?

2.     How do we bring about these services, supports, and accommodations?

3.     How do we measure the impact of making these services, supports, and accommodations available?

4.     How to we prepare and equip individuals with disabilities to become contributors in decision-making settings?

5.     What do we need to know to bring this participation to new situations or the next level?

6.     How do we measure the degree of participation in decision-making by individuals with disabilities and measure its impact in varied contexts?

As we answer these questions we will be able to judge whether participation of individuals with disabilities in decision-making is systemic, appropriately integrated into all components of decision-making processes, and can be sustained.

Thank you.

Common Grounder

Sustainability of a Good Idea and Community Action Plans

In the social sciences a lot of terms are floating out there — person-centered planning, life cycle planning,  self-determination, and many more. A common component of these terms, when it comes to a person with a disability, is the person’s direct involvement in decision making that affects him or her. This is driven by federal laws, regulations, and funding. Underlying this trend and federal push is years of experience and research that contrast what occurs when individuals with disabilities are and are not at the table when decisions are being made about them. Good things happen when they are involved and not so good things happen when they are not. The positive effect of their participation, their perspective and that of their advocates needs to be extended to tables where larger community decisions are being made.

There is a lot going on in education these days. Central to these activities is the role of the school in the community. Two initiatives involve federal funding for Statewide Family Engagement Centers  (SFEC) and Full Service Community Schools (FSCS). The Office for Innovation and Improvement in the U.S. Department of Education, where these grant programs were housed, recently has been merged with the Office of Elementary and Secondary Education, so old links don't work. However, if you Google the grant names, you will be taken to the webpages for these two grant programs. We here in Hawaii have a Hawai‘i Family Engagement Center and have put in a proposal for a Full Service Community Schools grant. Underlying these two federal initiatives are requirements for collaboration from parents, employers, and community organizations. Included among the intended beneficiaries are children with disabilities. It is clear that these two initiatives are after structural change that will be sustainable. The question is how do we get there?

It is clear that when you bring a diverse group together that can agree on a common goal, as demonstrated through “communities of practice”, amazing things can happen. Individuals are energize, empowered, and committed to achieving a consensus-driven outcome. But, what is also needed is a plan, strategies, resources, a way to judge progress, regroup, and share. Perhaps it’s time we coin one more phrase — a Community Action Plan — a CAP could be for an individual, a school, a neighborhood, a town, a region, or a state. It could focus on one thing like a transition plan for when a student leaves high school; a big thing like finding entry level jobs and promoting them or expanding early learning for three-and four-year olds; or a complicated thing like increasing the capacity of health care professionals to interact with and serve people with disabilities effectively, expanding supported living housing options for people with intellectual and developmental disabilities, or expanding accessible public transportation.

Doing any of this will not be easy. Any group will need to have at the table — people who can help articulate the goal; people who know what strategies are likely to work or who can bring an expert in to advise the group; people who have or can find funding and develop a budget;  people who can shape and carry out progress evaluation;  and people who can craft messages and inspire partnership among implementers.

If every community of practice or group recognizes that it not only must agree on a common goal, but develop a CAP for it, then it is more likely it will achieve its goal and sustain the goal’s longevity and provide a replication guide for those with similar interests.

Thank you.

Common Grounder

Quality of Life and Disability Rights: A Complex Intersection

Brushing one's teeth is a common occurrence. A person decides when and how often to do it, how long to do it, how much force to use, what method to use, whether to go electric or stay manual, how much force to use, and what toothpaste to use. If the person is a very young child or a person with significant disabilities, someone else may brush or supervise brushing. If the individual were three or five years old, she may care less about toothbrushing. The child will comply or tolerate supervision. At some point she learns that it is important and makes toothbrushing part of her daily routine. If the person has a significant disability and must depend on another person for toothbrushing, the tooth brusher may assume, since he is doing it, he decides when, how often, how long, how much force, what method, type of brush and toothpaste to use. So even with something as basic as toothbrushing, the element of rights comes into play. If the tooth brusher is "in charge" of toothbrushing decisions, what else is he in charge of?

Disability rights, making sure they are respected, may be the last human rights frontier we need to face. People with disabilities need to be at every decision making table to offer their perspectives on social, economic, and legal justice. But first, they must be offered a quality of life that allows them to make choices about how they brush their teeth. If they are not exposed to options and an opportunity to indicate preferences in matters of daily living, if they are not seen and participate in the whole range of social interactions others experience in the community, and if they are not given the chance to negotiation and compromise on equal terms with others, they will not be able to be a meaningful player at the decision making table.

Our solutions are not just to teach people with disabilities about their rights but to reshape the thinking of those who support, educate. and interact with them. We don't know what we don't know. Each of us -- both disabled or not yet -- needs to be shown how to respect rights and practice inclusion. It's not going to just happen without intervention. It is a progression. It must evolve, influenced by religious, cultural, ethnic, and familial factors.

Those of us who think we know what disability rights are and know how to teach them must recognize that in certain situations we may need to start with toothbrushing. We must work with the tooth brusher and the person whose teeth are being brushed by someone else. If we can build in the elements of choice, preference, negotiation, and compromise into the daily routine of tooth brushing, we can transfer consideration of these factors to other situations and build a common understanding of disability rights among people with disabilities, their families, outside care givers, governmental agencies, and policy makers.

As we all work to promote inclusive societies, here in the U.S. and elsewhere, let us be mindful that we should resist the temptation to parachute in with a solution that we are convinced will work. First, we must establish credibility and trust on the ground with individuals with disabilities, families, and community leaders. Second, we must work to improve the quality of life for the individual with a disability. And then, third, we can secure all the right people at the table and begin to pursue capacity building through education and systems change through transformative policy development to achieve sustainable evidence of disability rights.

There is a lot of work out there that needs to be done in educating people about disability rights and inclusive societies. Lets be thoughtful, patient, and smart as we go about it.

Thank you.

Common Grounder

Closing Remarks at the USICD Fundraising Gala

Aloha,

I was unable to attend the fundraising gala of the United States International Council on Disabilities on December 6th, but sent along some remarks. I hope after you read my remarks you will consider giving a year-end donation to USICD and/or joining it.

CLOSING REMARKS

Patricia Morrissey
President
United States International Council on Disabilities
Gala
December 6, 2018

It was fitting that you observed a moment of silence to honor our 41st President, George Herbert Walker Bush. I had the honor to work on his second presidential campaign in 1992. He was, perhaps, the last president to see the real connection between international peace and domestic harmony. I suspect everyone here tonight understands the importance of that connection. It is based on simple universal principles.

Support for meaningful inclusion
Promotion of sustained engagement
Respect for locally driven decision making
Commitment to building empowerment, capacity, and system change
And most of all, protection of all human rights

I know that in 2019 you will make a renewed push and help the U.S. International Council on Disabilities in its advocacy, convening, and training to demonstrate these principles in action.

When you do -
Parents will no longer be separated from their children 
All children will live within a family
Pathways and doors, and what is beyond them, will be accessible and welcoming
Supports and services will be truly person-centered and -directed
Opportunities to contribute will be redefined and limitless

The last time I saw George Bush I had my picture taken with him. I had lost an earring and my hair was falling down. When friends later saw the picture they said, "It looks like the President was holding you up and you just got out of bed." The first statement was true. This is what the President said to me. "Pat, thanks for helping me. Each of us has a job to do. Each job is important. Remember everyone is a potential ally or resource. Together we can make the world a better place for all. We did the ADA, when they thought we wouldn't or couldn't. We can bring it around the world."

He's right. It is happening. Help the U.S. International Council on Disabilities reach further, reach more, build bridges, strengthen connections, and THRIVE in its promotion of disability rights.

Thank you.

Aloha from Hawaii.

Please Attend the US International Council on Disabilities Fund Raising Gala!

ALOHA FROM HAWAII!

It's that time of year again. The U.S. International Council on Disabilities (USICD) is having its annual fund raiser. The details are below. I hope you will buy a ticket and/or sponsor someone else to attend. Each year the event gets bigger and better. This year is no exception. WE PROMISE YOU A GREAT EVENING. Our gala is our principal way of acquiring general operating funds. USICD sees itself as the key source of building connections among and convening those who want to bring concrete, meaningful expressions of disability rights into every corner of the globe; as the how-to platform for training and technical assistance (no problem is too big or small for resolution when it comes to policy development, capacity building, or system change); and as the voice at the table when decisions are being made about economic development and accessibility. Please help us! As president and chair of the Board of Directors, I will be forever grateful for your support of USICD. In these uncertain times when the wrong words do so much harm, the right actions are so needed and so much more powerful. Together we can show the power of good will.

Thank you,
Pat

USICD GALA TO CELEBRATE THE INTERNATIONAL DAY OF PERSONS WITH DISABILITIES 

The United States International Council on Disabilities (USICD) will hold its fifth annual fundraising Gala in celebration of the International Day of Persons with Disabilities on 6 December from 6:00 - 8:30 pm at the AT&T Forum in Washington, DC!

At our event, USICD will honor leaders of the disability rights movement whose impact has been felt on the international stage-American policymakers are recipients of the Dole-Harkin Award,for distinction in public service to the global disability community, and an overseas disability rights advocate is honored for his/her outstanding work in advancing the rights, opportunities, and dignity of persons with disabilities.

This year, USICD is delighted to present the Dole-Harkin award, named after Senator Bob Dole and Senator Tom Harkin to Senator John S. McCain III posthumously, and also to Senator Tammy Duckworth (D-IL). 

USICD's International  Advocate award will be presented to Rosemary Kayess from Australia who was recently elected to serve on the CRPD Committee. She is an accomplished human rights lawyer, researcher and academic. She is also currently Chair of the Australian Centre for Disability Law and Director of the Disability Innovation Institute at the University of New South Wales. 

The annual USICD gala is a spectacular event that brings together disability rights advocates, legislative leaders, new and long-term donors, business and philanthropic leaders, members of the diplomatic corps, and other friends of the disability rights movement.

Contact us to learn about Gala Sponsorship opportunities!

Click here to purchase tickets.